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Usher Parents Is it Possible

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Eye specialist's comment - It is rare for female mothers with Usher to comment ... one area only which means many parents had to travel from different areas and ... – PowerPoint PPT presentation

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Title: Usher Parents Is it Possible


1
Usher Parents Is it Possible?
  • By Emma Boswell
  • October 2008

2
Introduction
  • What is the aim of the workshop?
  • What does Usher Parents Is It Possible? mean?
  • Why is it important?
  • Pregnancy - what are the challenges?
  • 25 years on - has people's perspective
    attitudes changed?
  • Where to find information on parenting?
  • Are resources available from the Usher /
    Deafblind / Deaf Community?
  • What planning is needed to support Usher Parents
    in the future?
  • Research Project
  • A group discussion will be included in this
    workshop.
  • Please feel free to ask questions at any time

3
What is the aim of the workshop?
  • The aim of the workshop is to explore and
    understand the depth of Usher parenting this is
    the first time any research has been carried out
    on this subject.
  • Are there any other areas which we will need to
    do more research on in the future?

4
What does Usher Parents Is it Possible? mean?
  • In modern society in the UK, disabled people have
    more freedom to make their own personal choices
  • However there remains a negative portrayal of
    disability within some cultures in society where
    shame and stigma still exists
  • Are Usher people capable of being parents?

5
Methodology
  • Sending Usher Mothers Fathers questionnaires by
    email or face to face (BSL)
  • Asking social workers questions
  • Contacting charities if any support groups or
    resources for Usher / deaf parents
  • Contacting Eye specialist

6
Why is it important?
  • First research of this type that has been carried
    out
  • To investigate and to see if there is a need for
    a support group or to develop further resources
    for Usher / deaf parents
  • ADBN is focusing on Activity, ability
    participation Acquired Deafblindness in all
    stages of life this year

7
Conducting the survey
  • Developing questionnaires
  • Support from work colleagues
  • 9 people with Usher Type 1
  • 2 people with Usher Type 2
  • 10 women and 1 man
  • Ethnicity - 9 white 2 Asian
  • Responses total 11

8
Pregnancy What are the challenges?
  • Quote from one respondent
  • I could not use hands on communication for my
    scan as it is difficult to use when lying down on
    the couch.

9
  • High percentage of Usher Mothers had excellent
    support from health care professionals and
    ante-natal classes
  • 3 respondents - bump affected balance
  • 5 respondents For the 12 weeks scan, room too
    dark
  • 3 respondents - no interpreter for the scan
  • 6 respondents - happy with provision of
    interpreters for ante classes seeing midwife
  • 1 respondent had one to one support in ante-
    class
  • 1 respondent - used family member for note
    taking in ante-class
  • 2 respondents - had interpreters during labour.

10
After the birth
  • 100 of respondents - had hearing babies /
    children
  • Support availability not much support
  • Health Visitors supportive with Usher Parents
  • No interpreters provided for local baby group
  • Challenge in finding a nursery without word of
    mouth
  • 5 respondents - think their vision has
    deteriorated
  • Eye specialists comment - It is rare for female
    mothers with Usher to comment on how their vision
    has deteriorated particularly in pregnancy but
    know of no specific research looking into this
    issue
  • Worsening vision reported by Usher mothers is
    it the natural process of deterioration of RP or
    is having child/ren an additional risk factor?

11
Bringing up a baby / children
  • Nothing will stop Usher people becoming parents

12
GROUP DISCUSSION
  • Group discussion split into 2 groups
  • Group A) Need to identify a list of challenges
    that Usher Parents face when their baby /
    children are born
  • Group B) Should Usher parents receive support
    with their hearing children in the early stages
    of their baby / childrens development? Should
    charities provide more support for Usher / deaf
    parents?

13
Views of the respondents in this survey
  • 100 think charities should provide better
    services for Usher / deaf parents
  • 54.5 think they should receive support with
    hearing children from the early stages of their
    baby / childrens life
  • 18.2 disagreed One said its because he has a
    hearing wife the other believes in using sign
    language and natural communication
  • 63.6 have concerns about their baby / childrens
    development because they are deaf

14
What are the challenges for Usher Parents when
their baby / children are born?
  • QUOTE "An Usher mother takes her hearing baby
    to a local hearing mother baby club because she
    feels it is important for her baby to develop
    with other hearing children. Also the club is the
    place where the Usher mother can discuss issues
    or ask for advice from the other mothers.

15
  • Despite her well meaning intentions the Usher
    mother has no interpreter support due to no
    funding and therefore she cannot participate in
    the group fully on equal basis as other mothers
    who are hearing."

16
0-5
  • Little or no funding from Mother Baby clubs or
    nurseries to provide interpreters
  • Attend local hearing mother baby club
  • Missing out sharing vital information, for
    example, which nursery is recommended due to lack
    of provision of interpreter
  • Deaf parents club in one area only which means
    many parents had to travel from different areas
    and some are unable to travel
  • Transport problems.

17
Advantages
  • Using buggy/pushchairs helps balance and prevents
    bumping into people
  • Usher Parents can attend deaf parents club and
    hearing Mother Club if they want to their
    babies/toddlers to mix with their own culture

18
Over 5s
  • Quote 'I do not want hearing children becoming
    young carers for the Usher Parents.
    Unfortunately my child already became my carer as
    there is not enough support out there'

19
Over 5s (part 1)
  • Schools
  • School Play
  • Parents meeting other hearing parents
  • Difficult to make friends with hearing parents
  • As children develop their English language to
    advanced level, some Usher parents find difficult
    to teach their children
  • Teachers seem reluctant to find time to discuss
    children with Usher parents

20
Over 5s (part 2)
  • Activity Clubs after school challenging as
    Usher parents cant see in the dark or drive
    their children
  • Depends on where Usher parents live
  • Usher parents usually are low earners which means
    they cannot afford to buy property within
    walking distance to a school and activity clubs
  • Usher parents will include their children's
    friends to stay overnight
  • Transport

21
Advantages
  • Gives a lot of love and laughter
  • Shared experiences

22
How the barriers can be removed for Usher / deaf
parents
  • Involve Usher people in professional training
    courses i.e. interpreters, social workers
  • More Communicator-Guides for Usher Parents
  • Funding should be provided in the UK for support
    in the home and family
  • Usher / Deaf Awareness in nurseries and schools
  • Charities to support Usher / deaf parents
  • Provision of Interpreters should be automatic in
    all their childrens development and activities

23
25 years on- has people's perspective attitudes
changed?
  • 40-50 years ago, Usher parents were deemed
    incapable of bringing up a child just because
    they have Usher
  • Comment from Social Workers - To remove a child
    from their parents is a long process and it would
    have to involve abuse or neglect. If parent is
    Usher, is not a reason to remove the child.
    Strong evidence would be needed to prove that the
    child is at risk or not being cared for properly
  • One respondent had one professional telling her,
    'you should never have got pregnant
  • Another respondent said her relatives did try to
    take her baby away because he is deaf.

24
Where can you find information on parenting?
Are there any resources within the Usher /
Deafblind / Deaf Community?
  • Deaf Pregnancy book by RNID charity
  • Deaf Parenting UK

25
What planning is needed to support all Usher
Parents in the future?
  • Charities should give full support and resources
    to Usher / deaf parents
  • Need some improving with their children's schools
    e.g. awareness

26
Future Research Project
  • More questions still need to be answered so more
    research on Usher Parents is needed
  • More improvements needed to services in
    supporting Usher parents
  • Would you or your country be interested to be
    involved with future research project?
  • Research Funding - could we ask the EU?
  • Should we work with other groups i.e. Deaf,
    deafblind parents?

27
Conclusion
  • We have a better insights into the challenges
    faced by Usher Parents
  • People with Usher can dream of being a parent and
    having a family like anyone from the wider
    community
  • Thank you for listening.

28
Acknowledgements
  • With thanks to Sarah Reed and Tamsin Wengraf for
    their tremendous hard work during my maternity
    leave
  • Social workers Patrick Claydon and Christine
    Ashby
  • Mr Webster
  • Mary Guest
  • All participants from the survey
  • A number of charities.
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